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Living in CIRS Hell

I once had a dear friend ask what it was like when I was in the thick of Chronic Inflammatory Response Syndrome (CIRS). This is my attempt to respond to this query from an emotional level. It is a reflection of what I went through during the two years before, through my own studies and initiative, I was able to get properly diagnosed and begin treatment. During that time, I was trapped in a pergatory that no one seemed to be able to relate to. It was my own private Hell.

In the movie, Syriana, George Clooney sits in a students desktop chair, stripped from the waste up with his forearms outstretched and duct taped to the attached desktop. His torturer cruelly rambles on about the impending act of using a pair of pliers to rip each fingernail, one at a time, from its nail bed. Rife with fear and anxiety, Clooney says nothing. Trapped and alone, he knows it won’t make a bit of difference.

It’s sort of like that. Imagine being tortured over an over again. The process is exhausting. Like Clooney, you weep uncontrollably; you beg for mercy; you try to escape. It’s terrible. Unlike Clooney who manages to escape, nothing works for you. In fact, many treatments seem to make the situation worse although it’s often hard to tell. The anxiety is unrelenting. The distorted and macabre thoughts batter at your psyche in a never-ending parade. You stop sleeping. And when you do finally happen to nod off (more like pass out), you find that you’re more awake than asleep. The visions during this electrifying semi-sleep are bizarre and tie into your unconscious on deep levels. It’s all very surreal and horrific.

And then out of the blue, for no apparent reason, you get a bit of a respite. Maybe it’s an hour; maybe it’s a day. One thing is certain, it never lasts and the whole process begins again. Dear God, please make it stop! Please! The relentless onslaught in combination with the very real fear of losing your mind drives you to completely disconnect as you slip into the edges of oblivion. It’s too painful to stay alert.

On top of this, is a very real fear that the intense pain tearing you apart will seep beyond the confines of your body in the form of some delusional act – not that it doesn’t already in the form of angry outbursts and a complete lack of patience. However, the pain is so extreme that there is the very real worry that you may actually end up hurting someone and that someone may be quite dear to you. You don’t know if you can trust yourself to even be around others. After a time, just like Clooney, you simply stop talking both in an attempt to save yourself but also to protect those around you. You’re being disassembled from the inside out. Talking about it, save for with a trusted few, just seems to make the situation that much more dire.

For a time, you sought the help of others. You imagined that they could relate and might be able to help you find a way out. You kept hoping for a long time that this was the case, much longer than you should have. In the end, most just stared and bumbled about a bit. Everything seemed OK to them even though you were dying from within. In hind sight, how could anyone relate save for those poor souls that have been likewise afflicted? Doctors tried to medicate you until you’re worse off than dead – medicated Zombies don’t complain as much. After so many heartbreaking and fruitless visits to doctors, seeking additional professional help starts to become a risky proposition. Will they try to lock you up?

All the while your body is screaming for help. You walk about in severe anxiety and a deep dread because of it. All is not well, in spite of what conventional lab work says and even if you can’t explain how you know this. It is a visceral, intuitive knowing. You’re undergoing a slow and excruciating death. Worse yet, you suspect that the situation will continue to deteriorate, and perhaps become even more dire, if you don’t do something about it. If you could just lay down and actually die, it would be a God send. Unfortunately, you’re not allowed such a luxury.

At times, the pain and neurosis is so bad that your mind completely shuts down – comes to a full stop. It’s like a big, blank, white screen. Literally, nothing is happening upstairs. Life appears to go on around you but there’s no connection to it. When you do foolishly form any sort of opinion or care even in the slightest, a point of reference or attachment is created and this becomes a platform for pain. It’s impossible to hang onto anything, even your thoughts. When you’re rapidly tumbling out of control in space, its best not to focus on planet Earth as it zips past you at odd angles for split seconds at a time. To do so just invites longing, is disorienting, and with time becomes tortuous. It’s better just not to notice, to look the other way. Thoughts, feelings, and emotions arise but there is no connection to them whatsoever. There is very little “you” left now. A hollowed out shell remains.

To say this in another way, there are times when the process becomes so extreme that the mere mental act of entertaining memories of good times past turns out to be physically painful. What would otherwise be ordinary memories, and their related feelings, ends up causing many times more pain than the crippling fatigue and severe body aches that work in tortuous harmony with this sort of mental collapse. Thoughts hurt. In a desperate response, deep detachment takes hold. It’s the only way to survive. All sensory input is ignored including the movements of mind. You no longer care about the past, you don’t care about the future, and the present is some sort of surreal horror show. You stay like this for days and weeks at a time. You’re unplugged and remain in this state for the most part. It can go on for years.

At its peak, there is so much confusion. It’s nearly impossible to sort through it all and figure out what’s real, to get a foothold on reality. Is this Tuesday? Why am I standing in the kitchen? I don’t remember. Did I remember to shut off the gas on the stove or am I being poisoned to death? It takes a week to solve the riddle. The gas was left on with no flame. The strange smell and further distortion of thoughts was mistaken for more of the same from CIRS. It turns out that natural gas poisoning and CIRS have a lot in common. You drift through time, a blur of your former self. Meanwhile, your body fights valiantly to cling to Life leaving very little energy for daily activities. You become flattened. It doesn’t take long before you quietly pray for death on a daily basis. The prayer feels good.

And yet, somehow, somewhere, in spite of it all, the Grace of God tries to manifest. It always tries to find a way in. God hears our prayers. Out of this distorted and flattened plane and from deep within, insight arises about what may help. You don’t let in on your plan, not even to yourself really. Getting better is too much to hope for. Nevertheless and ever so slowly, you imperceptibly place your intention on this new direction. You begin to take on the notion of getting better and in the doing, begin shunning toxic foods, environments, and relationships. Little is shared of this change in direction save to a trusted few. You’re just moving and that is all. It’s important not to arouse the demons that creep within your mind and elsewhere. Destructive tendencies await the opportunity to pounce.

Slowly you transition back toward health. You adjust your approach on a moment by moment basis while always maintaining the quiet intention to heal. You consult with Healers, you study, and you carefully experiment. Slowly, ever so slowly, you pull yourself up by your own bootstraps. One day in the future, your health mostly returned, you weep and begin to shed the horror of it all. You can’t believe you’re going to get another chance at Life. It’s all too much. This is what it was like to have full-blown CIRS for me. It was a private Hell.

P.S. When my wife read this article, she complained that the torture scene was too harsh and that in general, the article was too depressing. I replied that I had not forgot the horrors of it all and that this was actually a sugar-coated version of the real story. Having been through this nightmare with me, she reflected for a moment and then nodded and agreed that the article should stay as it is. What would we do without the love of those close to us? I’m forever grateful.

3 thoughts on “Living in CIRS Hell”

Well, for one, your writing is gorgeous in general. Personally, I liked this article! It was…funny. 🙂 You know, the dark ‘truthy’ type of sense of humor. It was also evocative for those who have not experienced this and redeeming for those of us who have. Thank you for your art!!

Your blog is AMAZING. The best mold articles I have read yet. Will you please share the details of your mold-free construction project? (I do realize you eventually had those issues, but it sounds as if your walls, windows, and roof remain in good condition.) Even better would be if you include DIY hints and the cost (assuming it is not completely out of date). So many CIRS patients, as I am sure you well know, just can’t find a healthy place to live.

Well, I’d love to write a book like that but I’m not sure I’ll get to it in this lifetime. There are architects that specialize in MCS construction and I’m guessing this means they’re experts in water management too. Breathable walls, non-toxic building materials, and good flashing never go out of date 😉

I really wish someone would come up with a little chemical test kit. For example, when you go to a place you’re thinking of living in, a person could just swipe up some dust and put a drop of clear liquid on it. If the liquid turns red, the dust is loaded with bad mycotoxins. If a few pioneers at TellSpec can build a spectrometer to tell us the composition of any food, why can’t someone do the same for biotoxins. Sigh.

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